Welcome! This blog reflects more or less my description of living with Usher syndrome, my CI (cochlear implant) journey, my guide dog journey, and any random thoughts I may want to post.

Monday, October 09, 2006

Incommunicado

I have encountered this time and time again. Hard-of-hearing (HOH) people have to conform to the hearing world or so it seems. Most (most, not all, but most) hearing people would prefer the person with the hearing loss to communicate orally with them rather than to meet halfway or make it easier to communicate by signing. How many people want to learn sign language or put effort into it? It’s a novelty. Sometimes the eagerness to learn wears off. Why bother? The HOH person can speak. It doesn’t matter that it’s hard to get everything in a conversation. So many words sound the same. It seems like all the work falls on the HOH person. After all, the HOH person has to be a part of the hearing world, not the other way around. Of course, there are exceptions to the rule: Some HOH people out there do not know sign language. So it does rest on their shoulders, too. We must make it easier for them-the hearing people. If we can’t figure out what they are saying, then we either try to bluff it or endure an exasperated sigh with a “Forget it!” or a “Never mind!” I cannot count the number of times this has happened to me with co-workers, friends, and family.

If I try to bluff my understanding, it gets thrown back in my face. “I told you that...(fill in the blank)” I can’t win. I am a people-pleaser and I shrink from confrontations. I would rather walk away from a fight that is brewing than to bother sticking up for myself. Sometimes any reasoning on my part is no match anyway.

The only reason why I know sign language at all is because I went to a self-contained classroom with other Deaf or HOH students. I was fully mainstreamed in 8th grade and high school. I communicated with my family orally. We were not allowed to sign at home. This is because of the oralist or audist view that signing would just hinder our ability to talk. (My parents were told not to learn sign language so we would talk.) I am surprised I was even allowed to sign in school at all. My brother and sister were mainstreamed at a much younger age, so they didn’t retain sign language like I have. Don’t get me wrong, I can communicate with hearing people. My family is hearing. I survive.

I wrote a paper for a class titled “Assertive Listening.” One of the things I learned is to repeat as much as what is being said to me as possible so the speaker knows what I heard and fill in the blanks. This saves the speaker’s time so he or she doesn’t have to repeat the whole thing. And if I still can’t understand a word, I would ask that another word be used to replace the misunderstood word. I have been more honest about what I understood. Instead of carrying on like I did, I would say, “I still don’t get it.” Besides, I usually get caught.

Now add low vision. (Please note here that basically the only people I sign to are the interpreters at the local tech college I attend and the occasional fingerspelling by my oldest.) The signer has to be a certain distance from me (Again, if you have been reading prior posts, the “funnel vision” effect.) Sign language is really a visual language of the Deaf. I cannot see signs up close. The hands can be out of my line of vision. I have to remind the signer to sign closer to the body at a certain distance from me. In other words, I have to tell the signer to back up and sign in the upper body region where I could still see facial expressions. I need as much of the visual cues I can get.

When that doesn’t work, most deafblind people use tactile, tracking, or other modes of communication.

When a HOH or Deaf person loses all of his or her sight, then what? One, two, or all three main cues of communication are gone: Verbal, non-verbal (body language), and paralanguage (pitch, volume, and meaning). One cannot shout in a deafblind person’s ear. That does not work. One cannot pass notes to him or her; he or she will not be able to read it. One must put in more effort to communicate with the deafblind person. That includes tactile, tracking, and whatnot. No one wants to be left out. I know I don’t.

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About Me

Living with a genetic disorder called Usher Syndrome Type II. It's a gamble-each parent must have the same gene to pass it on to the child. There's a one in four chance of passing it on. One is born with varying degrees of hearing loss and loss of sight caused by a retinal disorder called retinitis pigmentosa (RP).